Wednesday, December 30, 2009

Oh boy, here we go! We have decided to go ahead and do IVF in January. The fact is that getting through the holiday season this year was pretty brutal, and we have a chance of not having it be so hard next year because we will have a baby (or babies – they are implanting two!) which would alleviate a lot of pressure. If I get pregnant in January, then I would have it/them in the fall. It was bad enough this year that we felt that beyond a doubt, this is the right thing to do.

Our embryos are going to have to be put through a lot with the PGD test and chromosomal testing, so they need to be as robust and healthy as possible. How do we get healthy embryos? Chris and I need to RELAX so that we create the highest quality material for their experts to work with. That means we go to work, come home and put PJ’s on and put our feet up. No hassle. Go to bed early. Do a whole lot of nothing. I have had some valuable time in December to get ready for this:

1. I have blocked off our calendars. We are not accepting any social engagements of any kind. I even put great big fluorescent pink stickers in my calendar that say “Schedule Nothing!” so as I bump into interesting sounding things to do, and reach for my calendar thinking “I can probably make that work!” that there is a great big reminder that I need to be home with my feet up and doing nothing else! Forgive us for being anti-social next month, but as much effort, money and energy as we are putting into this whole thing, we can’t afford to do anything that would put our chances at risk!

2. I am off work this week and I spent a day doing nothing but cooking. I have filled my freezer with lots of healthy yummy things so that my responsibilities are as minimal as possible. I am also definitely going to have my cleaning lady keep coming so that really, the only household thing I have to do is laundry and light grocery shopping.

3. As everyone was winding down for the holidays at work, I kept soldiering on, and churned through a crazy amount of stuff on my to do list. January is a tough time at my office. It is usually the most stressful month of the year. I did as much as I possibly could to prepare, and work ahead.

4. I have gotten completely sucked into a new tween vampire series of novels that are incredibly addicting and are just complete mind candy. (They are the House of Night books if anyone is interested!) They require no real thought, and I can feel my blood pressure come down as I settle in with one of those. I plan to keep reading stuff like that through January. I’ll save the thought-provoking award winning novels for another time in life. Right now, I just need trash that is fun to blow through! Got any fun things like this you think I should try? Send me a note and let me know!

So now with getting started! Today, I had my baseline appointment at the clinic. We started off by doing the initial ultrasound to check how things are doing. All looks perfect with my uterus and they feel comfortable moving me onto the big hormones.

We did injection training, as I will have to give myself a bunch of different shots throughout this whole thing. The first two weeks of the month, they are putting me on a hormone that will essentially make me go through menopause in a way. It will shut my reproductive system down. The reason why is that later in the month they will kick it back up and send it on overdrive so that I will release multiple eggs when I am getting ready to ovulate. Most women only drop one egg a month. We clearly need more than that to be successful with in vitro, so they have to trick my body into dropping several eggs. There were several hormones they will give me at different times in the coming month (about 4-5 different ones) so I will be a pin cushion!

I start this whole injection thing on Friday (ohmygoodness!!!). I feel pretty comfortable with doing this first round. The needle is small and I do it in my stomach. On a similar note, I have been getting allergy shots for the last two years, so I am pretty well used to that procedure (I feel like I could give them to myself by now, I know it so well!). The needles are very similar so I feel confident I can do this. I will get a package of my remaining medications on Tuesday of next week. I will take a picture and post it so you guys can see what a subterraneous drug user I have become!

We signed all the paperwork and paid the big check for the whole procedure. Signing the paperwork was like signing for a house or a car. We signed many documents in several different places. It was quite a contract! We signed indicating that we were aware of the procedure and risks, that we were able and willing to pay the hefty fees, and the trickier parts of this were the parts on our advance directives on what we want done with our leftover viable embryos.

The odds are that we will end up with leftover embryos that are MCADD free that are strong and could yield a pregnancy. We plan to keep any leftovers and save them for a few years until we know for certain we are done having babies. But what then? And what if one or both of us die? What happens to them then? This has been a tough ethical decision to weigh out. Chris and I are usually right on the same page when it comes to things like this. It is part of what makes us a good match for one another. On this issue we are somewhat split, which surprised me greatly! I am in favor of donating them to research, while Chris wants to donate them to an infertile couple. I was absolutely amazed by my husband’s kindness and generosity! My big concern is that we are not like teenagers that plan to give a baby up for adoption that can maintain some kind of separation throughout their existence until it is time to give it to someone else. I will always feel like they are my children, and I care a great deal about the environment in which they are raised. Just because you have the money to do this sort of thing does not mean that you will be a good parent. I am ok with donating if the parents can be screened in some way. Then, what if the child tries to find us later in life? How would we feel about that? Fortunately, we have a few years before we have to make that decision and can weigh it out.

As for the “what if we die” question, as morbid as it sounds, we are going to meet with a lawyer to get a will drafted as soon as possible. We have to have this in place before we have leftover embryos to freeze. Again, we are not quite sure how we feel about it, so we are going to appoint a family member as the legal guardian of them who will make the decision for us if something happens. That will hopefully give us some time to figure this out.

Please pray for us this coming month! I will be very hormonal throughout the coming weeks (granted, I am still doing acupuncture which is supposed to help with that quite a lot, More on that in another post!), and then will have the actual egg retrieval and implantation in the week of January 25th! Woo hoo!!

Sunday, December 13, 2009

If I ever run into another mom dealing with the loss of her baby so soon after their birth, one thing I will wholeheartedly suggest that she should do is start seeing an acupuncturist. Believe me, I am the biggest skeptic on these sorts of things (note the title of this post). I am now, after having seen an acupuncturist for a few months, a believer. Here’s the problem: you have just had a baby and your body is a mess. Your hormones are all over the place. You don’t look or feel like yourself. For the longest time you still look pregnant. Or maybe it felt like forever because people kept coming up to me saying “oh, when is your baby due?” which would make me cry, and they wouldn’t understand why. Write it off to hormones or something. Either way, you take the overwhelming sadness and grief, and combine it with physically looking and feeling terrible, and you have a woman in a dire state. I could hardly function. I have learned from past times of hardship in my life that if you can’t control the emotional things going on, a good place to start is with the physical. Eight hours of sleep at night. Three meals a day. Exercise even in small amounts if you can because that gives you endorphins, which make you happy. If you can get that done, you already have a leg up.

In that same vein, I started seeing an acupuncturist because I have heard that they can help get hormones back in order. They can help with weight loss. They can provide some help with emotional things. They can get your body systems in great shape for infertility treatments. I needed all of the above and I was willing to try anything. I was scared to death because I saw an acupuncturist when I was pregnant, and it did not go well. I don’t know what that guy did, but within 24 hours of treatment, I was an emotional nightmare, sobbing for no good reason. It always went away within the 24 hour period, but it scared me. I went a few times, and decided it wasn’t worth it. Acupuncture is not a very well regulated trade, and people can pick up degrees in it from anywhere. You have to do some homework and find a good one. The lady I chose to see this time is one I heard about from all of the moms in my prenatal yoga class. They all sung her praises and swore by her for an assortment of issues. I have to say that from my own experience, she is quite amazing, and has eased a lot of the stress and physical issues I was facing off of my life. She has gotten my hormones in order again. She has helped me lose weight. On the emotional things, when I have had a bad week, she has a protocol for how to help give me a break from the heightened emotions I feel. It gives me room to use the tools I have learned in counseling and grief groups.

For example, I had a really bad few weeks, and every week, she would look at my tongue and tell me that I was “yin deficient” or “blood deficient.” She would tell me that I needed to eat more red meat. I would walk away thinking “whatever, witch doctor…” and not really put any effort or energy into it. Finally, I got sick of her telling me this, so I went home and I ate red meat every day. Oh my goodness what a difference it made! My energy was better. My emotions were better. I now eat red meat every day and it helps me tremendously! Another week when I was really in a bad spot emotionally, and couldn’t seem to get out of my funk, she put me on a herbal regimen, taking a couple of different supplements, and I felt like a new woman by the time the week was over. I no longer question her judgment and just go with the flow with what she prescribes.

The jury is still out on the impact it has on infertility treatments. They say that if you do it for a series of treatments before you do your IVF cycle, it helps your body respond better to the drugs, and gives you a better success rate of it working the first time. This acupuncturist is about to be published in some big hoopla fertility journal for a study she did on a few hundred women in the area. One in four did not have to go back for subsequent rounds of IVF treatments. For those one in four women, it worked first time (the average is that it takes most women 2.5 times of doing IVF before it takes). It is also supposed to help minimize the side effects of all the hormones and other drugs they put you on. I hope that is true!

I am not going to say that she is the sole source of my healing thus far. I have been in tons of counseling and support groups. I have done some old fashioned hard work with diet and exercise. I am merely stating that this doctor is in my repertoire of things out there that I have used that is a part of my overall health and well-being. I can wholeheartedly say that I gotten some very good results from it. Getting the physical me in shape has definitely helped to make the emotional side much easier to handle. Acupuncturists are into whole self healing – physically, emotionally, spiritually. It is great to have someone being a caretaker of me in such an all-encompassing way!

For my post on my first experience with acupuncture when I was pregnant, go here: http://maggiepaws.blogspot.com/search?q=Sarah%27s+Adventures+at+the+Witch+Doctor+

Thursday, December 3, 2009

(I have learned a LOT since I last posted, so this one is really long!)

Modern science is really quite amazing. Just as a refresher, PGD stands for “Pre-implantation Genetic Diagnosis.” This is the science where they can test an embryo before it is implanted to see if it is sick or not. The first step in all of this getting pregnant again stuff centers around getting this test built, so that as soon as we have embryos created, they can be tested right away and we will know very quickly which ones have MCADD, and which ones do not. The timing of this is very sensitive so we have to work very hard to have all of our ducks in a row from the start.

Step 1: Toothbrushes

Last post, I talked about the toothbrushes that the lab was sending us to collect our DNA samples. We were on pins and needles the day they were supposed to arrive. We were just so excited to physically do something towards this goal. I sent my parents by my house mid-afternoon when the mail arrived to see if it was in there. Nothing. They weren’t there. Bummer. We went on about the rest of the day. That evening, at about 9pm, Chris and I took Maggie for an evening walk, and wedged in the door was a FedEx package! It was addressed to us from the lab. This is it! We thought it was coming regular snail mail and didn’t expect this. We hurried up and got Maggie around the block, and then hopped into the car to go up to Woodland Park to my parent’s house. They wanted our parent’s DNA samples as well, so they sent toothbrushes for my parents in our package. They sent some out to Kansas City to Chris’s parents as well, so Chris called them on the way up the mountain. That evening, we all scrubbed our cheeks as the instructions directed, and the next day, all packages were back out on their way back to the lab through FedEx.

You swab with the brush for 30 seconds, and then stick it in the tube thing.

Just before the swabbing began. In the picture is Chris, Dad and Me.

Step 2: DVD

After the tests were sent back to the lab, in our packet of things that came (aside from the toothbrushes) was a DVD that we had to watch before we met the doctor. It walked us through the whole process. We had a pretty good handle on what was involved having researched it pretty thoroughly already. The thing that struck me was all of the parents that they talked about and interviewed all had pretty much the same story as us. They were either caring for a very sick child, or had lost one like us. It was both comforting and sad.

Step #3: Phone Consult with the Doctor

After we watched the DVD, we had a phone consultation with the doctor that runs the PGD lab we are using. In the DVD we learned that this guy was one of the ones working on the human genome project. He is also the guy who developed the PGD test. There are only three places in the country that can do this testing. He trained the other two how to do it. He is the head honcho, and his clinic does more than the other two. It was amazing to have access to him like this. He was really open and friendly, and eager to teach us as much as he could on what they were going to do. It is highly unusual for a lab to talk to patients like this. If you think about it, when you go to labs for most things, you give them your sample, and then the results are shipped to your doctor, who interprets them and tells you what you need to know. This doctor is very passionate about what he does and the people he helps and likes to be the one to teach you about what he is going to do, and answer any dumb question you may have so that your stress and anxiety over the whole thing is minimized as much as possible. He was super caring and open, and it really reinforced what a great decision we have made.

Here’s what we learned:

For our genetic issue, they have to build a probe unique to us. As he described it, genetic code is made up of four letters,that are used over and over again in various sequences. One person’s genetic code is thousands of characters long. Think of a several volume set of encyclopedias. They tell what eye color you will have, how tall you will be, your gender, etc. He equates a genetic mutation as a “molecular misspelling” of a person’s genetic code in one particular spot. The probes they build are, in a sense, genetic spell checkers that look for those misspellings. They know that MCADD is in chromosome 1 (or book 1 of the set of encyclopedias), chapter 31 of the book, in paragraph 6. The spell checker they are building for us will look for a misspelling in paragraph 6. The typo can happen anywhere within that segment of characters. Depending on what the mutation looks like in the mom and in the dad, it can vary where in that paragraph the misspelling will be. So, we can not use anyone else’s already created test. It is unique to each couple.

In addition, the timing of being able to locate the issue and report back on the health of an embryo is crucial. An embryo can only live outside of a uterus for 6 days. They have to be able to turn results around overnight. He said that they will have three PhD scientists working on our case, and they will work 17-18 hours straight through the night to get it done in time. So, having a very specific test that can find the issue quickly is key. On a fun note, our team that we have been assigned to is called the Blue Team, and they are designing and building our test, and will test our embryos as well.

Once the test is built, it will be stored at their lab for as long as we need it. This can be years and years down the road if need be. We do not have to pay storage fees. If we do more in vitro in the future, and have to test more embryos, they will have it ready for us.

They have a 2% error rate. This basically breaks down to in the last 18 years since they have been doing this, they have had 16 cases where they found an embryo to not be sick when it actually was. They have, however, never mis-diagnosed MCADD. The fact is that it is not a perfect science, and they insist on either an amniocentesis or a CVS test once I am pregnant to make sure that everything is ok.

We are going to go ahead and have them do the additional chromosomal test that looks for down syndrome, spina bifida, cystic fibroses, and a whole host of other issues. They can do all of that plus the MCADD test off of the one cell we will be sending them, and within 24 hours. That is so amazing! A year ago they couldn’t do both tests at once off of one cell, but they have within the last year figured out how to do it.

We also are going to get set up to donate our MCADD positive embryos to them for research purposes. We had initially hoped to donate them to the Children’s Hospital in Denver for their research, but they do not have the proper certifications to accept stem cells. Giving them to the PGD lab is, as we have learned, probably a better way to go anyhow. They have a really wonderful program set up that is fully funded by a grant. They have partnered with Stanford University, which is where most of the work will take place. Chris and I will sign some papers stating our intentions with our sick embryos. Stanford will then send our IVF clinic a mini-incubator that they can package our embryos in, and send them with expedited shipping via FedEx to their lab. Once they are there, they will insert a pipette into each embryo (which at this point would be maybe a dozen or so cells, and remember that an embryo can only live outside of the uterus for 6 days, so they would not survive anyways without being frozen) and extract out as many cells as they can. At this point, the embryo is no longer an embryo. It is now a collection of stem cells. They will put these stem cells into a petri dish, and be allowed to grow and divide. They grow across the dish in a 2-dimensional fashion. As they do this, the stem cells tell a story about MCADD. Scientists can study them, and use what they learn to develop a cure and/or treatment plan. At Stanford, their whole thing is getting the stem cells set up so that they can be tested. Other labs across the world can contact Stanford and request samples that they can research. For example, I know that in Paris, doctors are studying fatty acid oxidation disorders like MCADD and are testing the use of cholesterol reducing drugs to help treat the illness with great success. They could request that Stanford send them some stem cells that are affected with this illness to further their research. Our donation could be sent to them to help them along. Having been through losing Noah to this illness, I will do whatever I can to help prevent this from happening to other families. This is a “must do” in our books. Best part is that thanks to this grant, all of this will be free, and taken care of behind the scenes. Chris and I just sign a form, and transportation of our embryos to Stanford, the stem cell extraction, the shipping to laboratories and other expenses involved are all covered. Pretty awesome.

Finally, the doctor asked us to send him a picture of us for them to put in the lab where they will be working on our probe. He kindly explained that he went into medicine to help people, but in the line of work he chose, he rarely gets to meet his patients in person, and he and his colleagues really miss that part of it. They like to connect with the people they help where possible, and this is something that they do. We’re sending these two pictures…

He told us both, very emphatically I might add, that we need to watch our stress levels. It has a huge impact on our ability to create robust embryos that can withstand all that we have in store for them. That is hard considering that we are right smack in the middle of the holiday season. We are just sick for our boy, and how different this year should have been. Hearing the doctor talk about this, please forgive us if we are a little withdrawn and don’t show up to as many things as we ordinarily would. Please know that it is for the purposes of self-care, and trying to relax at home as much as possible.

They will have our test done and ready to go by mid-January. Oh my goodness! We are currently weighing out when we want to do IVF. On one hand, the most stressful time at my work is in January. On the other hand, if I can possibly avoid going through another holiday season without a child in hand my world would be a better place. If I get pregnant in January, I will have a baby by Halloween. But if I do it in January, then am I not giving us the best possible chance of being successful with my work stresses? Ugh…ruminating on that right now. None of this is easy, that is for sure!

Thanks for reading. This whole thing is information overload for sure, which is why I end up writing so darned much! We are grateful for your support.